Orthostatic Intolerance Spectrum: Living with Orthostatic Intolerance

Orthostatic intolerance refers to a person’s inability to remain upright without symptoms. It is a common sign of dysautonomia with multiple symptoms.

You’ll be doing everything right, and then all of the sudden you start to feel really bad.

Give in to it. Lie down. Don’t try to push through it. If you do, you’ll make your symptoms worse.

Randy Thompson, MD

Orthostatic Intolerance Spectrum Symptoms

Only about 40% of people with dysautonomia actually pass out, but 99% have overwhelming fatigue. Most patients have daily symptoms that they learn to live with and episodes where the symptoms be- come overwhelming and they need to lie down. Lying down relieves orthostatic stress and improves symptoms in orthostatic intolerance. Most patients have many symptoms beyond lightheadedness. Take a look and see if any of these other symptoms are familiar to you.

Common Symptoms Reported by Patients with Orthostatic Intolerance

Brain Fog/ Mental Clouding
Difficulty Finding Words
Short Term Memory Loss
Sensory-Hypersensitivities (e.g. light, sound, motion, touch)
Parasthesias (pin's and needles feeling)
Numbness of Hands and Feet
Coat Hanger Pain in Neck and Shoulders
Migraine Headaches
Other Headaches
Exercise Intolerance
Heat Intolerance
Abnormal Sweating
Temperature Dysregulation
Abdominal Pain
Gastroparesis (Gastrointestinal tract stops moving)
Chest Pain
Difficulty Breathing
Anxiety or Depression
Difficulty With Depth Perception
Tinnitus (Ear ringing)
Flushing (dry, red, hot face or upper body)
Cyanosis in Feet (blueish/purple color change)

Plans Will Change

You’ll make plans to go out with friends and, just before it’s time to go, you start to feel bad. Since your episodes will start with symptoms of feeling bad, it’s important for you to pay attention to your body. What kind of “bad feeling” or first symptoms do you experience? It’s important to note differences like those between being tired and being fatigued. Your symptoms may vary, but after time you may begin to recognize a helpful pattern. Once you realize that you are starting to become symptomatic, give in to it. Lie down and rest. The relief of orthostatic (upright) stress will improve your symptoms.

Once you get into an episode, it may be helpful to load up on fluids and salt. Drinking 32 oz. of cool liquids quickly, along with eating a salty snack, may help speed your recovery. Most important is to pay attention to your body and, when you start to feel bad, change your plans and recover before your symptoms worsen.

Brain Fog—A Difficult Symptom for Most People to Understand

Brain fog, or mental clouding, occurs when there is not an ideal amount of blood flow to the cerebral cortex (not a dangerously low level but a smaller than normal amount). This lower blood flow causes difficulties with concentrating, finding words, laying down short-term memory tracks, and other symptoms. Don’t worry, you are not losing IQ points. It is a temporary symptom that can improve when you reduce stress and get good rest.

It is important to note that sitting upright is an orthostatic position which may cause you to experience symptoms. It is helpful to determine how long you can stand and/or sit upright before experiencing symptoms, so that you can be prepared and plan activities appropriately.

Leave a Reply

Your email address will not be published. Required fields are marked *

Welcome to our new website.

Some links and features may not work immediately. All links and features will be actively working in the next 24-72 hours. Thank you for your patience.

Get a Book

The Dysautonomia Project book has reached around the world as a much-needed tool for providers, patients or caregivers looking to arm themselves with the power of knowledge. 

"I highly recommend this book to not only patients but physicians as well!"

"This book has helped my doctors feel empowered to treat me and recognize other patients who are similarly affected. It helped educate my own family too."

"If you are like me and have been pushing in hard for many years or maybe not so many years...for a diagnosis and just want more information on Dysautonomia conditions then this is the book for you!"

"Truly amazing book, an insight into Dysautonomia, informative and educational for both the patient, family and clinicians."

"Excellent book, on many levels, it helped with understanding links with gastroparesis and hypermobility amongst many other things."

"Very informative. The side of the page which is meant for medical professionals is still very readable for patients and provides all the useful info. Great if you've just been diagnosed or to take along to show your doctor."

"Great book with clear format for both patient and doctor. Lots of information, easy to understand."